Breast cancer survivors` recollection of their quality of life: Identifying determinants of recall bias in a longitudinal population-based trial

Abstract

Background: The recollections of survivors of breast cancer are an important source of information about the disease for their family, friends, and newly diagnosed patients. So far, little is known about these memories. This study investigated how accurately survivors of breast cancer remember their past quality of life (QoL) during the disease and if this memory is modified by women`s present QoL and negative affect.

Material and methods: The longitudinal population-based study included 133 survivors of breast cancer (response rate 80%). Participants were asked for their present QoL and to recall their baseline QoL (EORTC QLQ-C30, QLQ-BR23) that had been assessed about seven years ago before discharge from hospital. The dependent variable was recall bias in ten QoL dimensions. Present QoL and negative affect (PANAS) were investigated as predictor variables.

Results: Overall, baseline QoL was retrospectively underrated on seven out of ten scales whereas no significant overestimation was found. In multiple linear regression analyses, controlling for confounders, a stronger underrating of QoL was significantly predicted by a lower present QoL on nine out of ten scales and by higher negative affect on six scales.

Conclusions: Survivors of breast cancer tend to underestimate their past QoL during the disease when asked about seven years later. Lower present QoL and higher negative affect contribute to this recall bias. This needs to be considered when interpreting retrospectively reported QoL data. Results are discussed in relation to theory of change or stability and mood congruency theory.

Fig 1. Baseline QoL, Follow-up QoL, and Recalled QoL on Ten Scales of the EORTC QLQ-C30, QLQ-BR23.

Baseline = first questionnaire filled in 0 to 2 days before discharge from hospital; follow-up = about 7 years after baseline; recall = recollection of baseline QoL about 7 years later; GQ = global QoL; PF = physical functioning; RF = role functioning; EF = emotional functioning; CF = cognitive functioning; SF = social functioning; FA = fatigue; PA = pain; AS = arm symptoms; higher scores mean better QoL, reference values can be found in Hinz et al [20].